Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Saturday, May 29, 2010

I've been hacked

Dammit! I've been hacked!
I'm going to give my site a couple more days and hopefully the irritating pics disappear.
If not, I guess after almost TWO FULL YEARS of writing (July 28, 2008 to be exact), I could change up the format and make those images disappear.
Very import, Now let's be honest people, is the music good or bad?
I'm polling.
Should it stay or should it go?
Sorry for the reading inconvenience.
Thank you everybody who notified me of the problem

Friday, May 28, 2010


It still surprises me when I hear the bath start early in the am knowing its just x and I in the house.

It takes a second to realize, "oh, yes. X is seven. He bathes himself. He has a morning routine."
 I am happy I've made it to this point, the point where my family has routines and stability. We have a solid lifestyle that can be depended on even in an emergency. We've finally made it. 
Let me hear you say, "aahhhhh.". 
No time for big posts today except to say I'm doing great.
I spent a fabulous day with killy and co. prepping for her wedding with a spa day yestrday.
We were feeling some kind of chic going to The Spa at Castle Hill Resort in Ludlow, trapsing around by the pool in our robes and slippers while waiting for our hot stone massages.
The spa offering a Sun- Thurs. special of a facial and 50 minute hot stone massage for $99. This includes full use of the facility: a gym, pool, hot tub, and dry sauna.
If you do find yourself heading to Castle Hill, ask for Beth, who spoiled me with a fabulous massage combined with some foot reflexology.
Patients at Norris cotton and Dana Farber can access this kind of pampering right in the hospital. If you're at Dana Farber, head to the Zakim Center. If you are at Norris cotton, I would ask your nurse. Therapists come right to your bedside there.
Cancer center's don't offer french manis & pedis though, and that's where we headed after our relax lounge time was over so the bride could begin her official wedding beauty regimen.
I do love the tradition of pampering yourself before any big event. It's the only time I ever get my nails or toes "done" and it's always worth it.
I don't think I would feel so posh if I indulged myself weekly though,
 or even monthly, what ever.
Today, again, is not about me
which excites me. I love being invited to participate in other people's life events, especially this time with Vince and Killy getting married.
Killy and I have been friends since freshman year of high school. We've seen each other through years of life changes. It is amazing to see her officially confirming she has found her partner. It's even better because I think everyone agrees, they're pretty perfect together. 

Thursday, May 27, 2010

What's on the Inside



I got ahold of my heme team in Boston after I needed to be transfused last week.
I didn't like that my h and h had been trending down slowly but steadily with no known cause. 
I needed reassurance it wasn't that nasty little tumor on my kidney causing problems even though Dr G said he felt it wasn't. 
I'm all for gut instincts, but after this fall's events, I said I would never hesitate to consult or see my bean town team. Had I run to consult them early on, I could have saved myself a lot of suffering.
Never again.
Good news is it's common for patients to need transfusion support when undergoing photopheresis. 
My treatment is probably the cause of my anemia and not some pathological process. 
Now, if only they could explain away my steadily increasing kidney function tests. 
I have been keeping my eye on those two. My creatinine reached 1.4 this week, which isn't failure, but I certainly don't ever want to have that problem. 
Having my kidneys fail is another fear of mine.
 When I was in a coma, my friend Doc would come to visit and immediately check for urine in my catheter bag. He was checking for kidney function bc he knew once my kidneys failed, I was as good as gone.
 That's always stayed with me.
 I want to keep my kidneys in tip top shape. 
I'm going to start receiving fluids along with pheresis. Pheresis all ready infuses half a liter with treatment. I'll be getting a whole liter from now on.
I'll continue to drink as much as possible.
 I guess I could drink more, but I do imbibe about a gallon a day. I'm adding crystal light to make water more tolerable. It's working. 
Anyway, drinking more is a twofer since I'm decreasing my prednisone again in a week to 10mg, A person's body naturally creates about 7.5 mg of steroids, Just a little tidbit you can now answer if anyone ever asks, so I'll possibly, hopefully, may start losing some weight.
Kevin, the empathetic nurse from pheresis, came to me and asked, very quietly, how much I weighed.
 I looked around the room, wondering who he was trying not to irritate by whispering. "WHAT?!" I squacked, I can be slightly deaf. 
"I weigh 150 lbs." I announced clearly.
 "What?!" He whispered back. "You do not! You are 135!" He exclaimed in hushed tones. 
"What the hell was going on with this whispering?" I thought to myself. There was no one else around. 
"No, I just got weighed yesterday. I'm 150." I said stubbornly, adamantly, loudly when I suddenly realized he was whispering the question to be courteous to me!! 
How cute. Ladies are often embarrassed by their weight.
Again,I never thought to be embarrassed until he was for me. I just think there is more woman for you to love now. 
For real now, I really am thinking about this weight gain like pregnancy. It's a bodily change I have no control over. It's for the greater good. It's also temporary. When the meds are lifted I'll see exactly what was a side effect and what was good old fashioned eating.
I do still hate to see myself in pictures. I hate that my face feels different and I don't have command over my expressions like I used to due to the swelling. I think this has dulled my emotions. I feel with every part of me, and now, I just dislike how I look when I smile. 
My head is huge. I feel like "Fat Head" from Dick Tracy. To help with this, I've started to try to look at and think of myself the way x looks at me, or my parents, or any of the other people who love me, which is actually more people than I ever imagined. 
All they see is my behavior, whether I am happy and healthy and joking that day. That's all that seems to matter is that I'm well enough to be me, the fun, silly me on the inside. So I've made the conclusion, it's official, it really is what's inside that counts. 

Wednesday, May 26, 2010

Bull Riding 101

Summarizing. .


Happy Birthday, Killy!




Long story short, summarizing my party weekend, I did it!
Yes, I stayed up until 2:30 am and woke at 7am. 
It felt just like college, like old times, when I would commute between nh and nyc.
 After our son was born, j opted to stay in nh to work while I remained in college in ny tues-thurs, but sometimes I'd stretch out the week to friday for some thirsty thursday night fun in. And believe it or not, I didn't drink in college, but not for the same reasons I didn't drink last weekend.
We ended up at a Club called "The Liquor Store," which had made for party-planning mix-ups all week ("Ok, then after the Improv, we'll head to The Liquor Store. . . " "Hill, Don't they have a bar there?" etc. etc.)
The main attraction of The Liquor Store is that it caters specifically to bachelorettes, letting the whole party in for free before 11pm and giving out free swag bags.
Don't be fooled by their good marketing, the swag bags got ditched for being cheap. They didn't include the "bachelorette" tank top promised. It did come with a cheesy plastic light up cup and penis straw.
The penis straw promptly ended up in the mouth of the lesbian in our group.
We thought it was more important that she get the experience.
The main attraction, and selling point, was the mechanical bull front and center. I had big plans to incite the group into riding.
One lone member of our group made it on. The line cut-off and the bull shut down right before we made it at only 12:30 am!!
This was clearly a case of "brunetticism" if I've ever seen one, yes, discrimination against brunettes.
The line was cut right before the brunette, mid-length haired friend with glasses.
The bull did get fired up again later in the night for one rowdy, raunchy show though.
I swore it was n employee riding the thing. She did have long, blond hair, a plaid shirt  on and white/ see through daisy dukes. 
If she didn't work there she certainly came prepared, but I guess that's what you get.
Just for kicks, for giggles, I'll load the video of an anonymous member of our party having a go at the bull.
You can finally live vicariously some of the better parts of m life.

Tuesday, May 25, 2010

Call From the Cancer Society


Please take 30 sec today or tomorrow to call the Senate office at 271-2111 and leave a message with the receptionist- "Please tell the Senate President that I want a significant tobacco tax increase to be included as you work to fix the budget. Thank you!"

We would also appreciate if you could also do the following:
  • send me a quick email to let me know a call has been made-we're tracking this very closely
  • send this out to everyone in your email address book-post it on FaceBook! We need our voice to be LOUD AND CLEAR!

Thank you so much for all that you do for cancer patients!!
Maureen

Maureen Leary
Grassroots Advocacy
American Cancer Society
One Bowdoin Mills Island Suite 300
Topsham, Me 04086
207.373.3711/cell:207.590.5564
fax:207.725.6680

Monday, May 24, 2010

Don't Let Cancer. ..


. . . keep you from dancing.

Today feels like a Monday.
I never feel the Monday madness.
I think that's reserved for people who work or have some kind of set schedule.
My Mondays are generally reserved for a big long recovery nap from the weekend.
This Monday morning I'm feeling a lot like I did back in my college days after having a weekend reminiscent of the good old days.
Yes, it was time I tested my body in a big way and went all out for a couple very special occasions: Danielle's year post-pancreatic transplant anniversary and Killy's Bachelorette Party.
In anticipation of my party-hopping weekend I didn't travel to Portland for my future sister-in-laws pinning and I did miss someone's thirtieth b-day bash.
It seems like everyone picks the same weekend to celebrate.
The boys let me go to bed early Friday and lay low Saturday morning to conserve my energy.
D and I had been talking about her party for say, oh, the last year since her surgery, and since I was cutting out early I went early to help set up with Brynn.
D was in the throws of making her cake, a pancreas shaped red velvet master piece covered in pink and tan fondant and infused with blended cherries (so when the cake was cut it would ooze).
I think you have to have the quirky medical sense of humor many patients and professionals possess to understand the joy that went into planning that cake down to the duodenum.
Even i got into it making sure my mexican seven layer dip was topped off with gaucamole in honor of all the bile that probably released itself during her surgery.
I didn't really talk about that though. I thought a whole anatomy lesson on the pancreas and the common bile duct to explain a joke was probably a little much, and there just wasn't enough other geeks like me there to get it.
I cut out to catch a little bit of X's baseball game.
The look of delight whenever I surprise him never gets old. I relish those looks. I don't think there will ever be anybody again in the whole world that is ever that excited to see me or misses me so absolutely.
I ended up leaving the soiree to move on around 3pm for my friend Andrea's and my big secret bachelorette plans for Killy.
We knew the cat and been let out of the bag by her mom who gets a pass for being overly stressed with the wedding and family issues that the party was taking place that night with the two of us driving down to Boston for a night on the town.
That's all she knew though.
Killy behaved and didn't push her mom for more details.
We started the drive to Boston a little before 4pm with A's tom tom at our side.
I don't know how anybody arrived anywhere before the advent of GPS navigation systems.
I did my fair share of exploring the world before I had a pocket sized satellite computer giving me turn-by-turn directions and I vow never to go back to those anxiety inducing, fear drenched days of staying up all night wondering if I'll be able to find that place safely in that neighborhood at that time in the morning.
Those were the dark ages.
It's scary just to think about them.
I wonder just how many relationships have been saved by the mass production of Garmen's and Tom Toms?
I know I've been in some serious altercations about directions during the dark ages without satellite guidance.
Anyway, they're a blessing and a curse because after driving one large 25 minute circle around Bean town (which I was pretty confident we did but couldn't be sure since I usually make a bee-line to the hospitals) we arrived at an intersection I could have navigated to in five minutes from the highway.
AAARRGHHHH.
C'est le vie. We made it there safely for 6:30.
Most of my adult life my bedtime has been 6:30.
I was a little anxious about my ability to hang.
So nervous in fact I contemplated getting some ritalin or adderal to ensure I'd stay awake.
I am a palliative care patient.
And I've vowed if I was capable I won't ever let myself miss a big important event, like a bachelorette party, again.
In August I helped plan my friend Nicole's party. We threw the pre-party at my house. It was a 3 stage event getting more and more inappropriate as the night went on.
Stage one and two were lots of fun, but I bailed out before the limo left for the clubs even though I'd worked out all the arrangements because I was worried I'd get sick.
Guess who got sick anyway?!
Four days later I was admitted for what we thought was pneumonia.
Dammit if I'm going to be sick I may as well have a good time getting that way.
And of course, Nic's favorite part of the evening, the one with all the pictures, was the part I couldn't participate in.
I missed Maggie and Colette's weddings, Countless baptisms, 1s birthdays, 30th birthdays, Bachelorette parties, girl's weekends, etc.,etc., etc.
The best thing I have done is prioritize and never let go or allow myself to stop participating in those events.
Never, ever let a diagnosis stop you from doing what you love.
Had I curled up in a ball of despair with my cancer and not done anything I'd be looking back at these four years, and my life, a lot differently.
I still have no regrets.
So we walk in with no fan fair, no "OMG, I can't believe you're here." and "How did you make it?" squeals of delight or even, "What's going on guys?"
Just the preliminary hugs and kisses of friends who haven't seen each other in a while before we dragged the bride-to-be off to get dressed appropriately for the evening.
I did the math. I went back in my memory banks.
I think the last time i went out and partied until the early am was almost two years ago at my sister's bachelorette party.
I may have had one other serious night on the town in August 2008 in Manhattan, but the date there is hazy.
I've had quite a few crazy Manhattan nights on the town.
But I'd never done the Boston party scene. . . . .
I'd booked reservations at The Improv Asylum in Boston's North End (that's by the bay where Fanuiel Hall and Quincy Market reside).
I've been to the North End before. . . . . on field trips with school or on outings with Xander.
We hit up the aquarium. There is a great Children's museum around there. Quincy market is cute.
Those places are no where as cool as the city at night all lit up with the smell of authentic Italian and fresh seafood wafting through the air and excited tourists all mulling the streets.
I have been missing out.
I misjudged Boston.
I love New bury St., the fashion hub of bean town.
Now I'm loving the north end.
I had been out on the town there once for dinner after a day full of trial chemo.
I felt fine when I left the hospital with Steph, Heather, and Allen.
I though we were just getting a bite to eat.
Little did I know I was being taken to a pick-up sports bar immediately after eight hours of being infused with magnesium that sent my bowels spasming and a phase I trial drug, meaning never being tried on humans before.
I walked in to a bar full of gawking males. Completely unexpected.
I ordered my meal.
Then I managed to grab my stomach and heave a couple times before barely making it to the ladies room to collapse and throw up.
Mean while Heather and Steph are at my side, rubbing my back, and all I'm hearing is, "It's okay, honey. They just think your drunk."

Run out of time. Things to do. . .
To be continued. . . .

Saturday, May 22, 2010

Re-Introducing


Thank you everybody who has ever gone out and donated blood in their lifetime.

Getting a blood transfusion is the only possible way to infuse energy into me.

I’m feeling perky.

I’m feeling ambitious.

I’m finally getting around to playing with my new camcorder.

Maybe some of you have noticed the lack of videos on my site.

This wasn’t due to laziness.

Oh no, this was due to chemo brain and months of self punishment for being stupid enough to lose a $300+ camera.

I’m pretty sure that camera with its 68mg SD card is now the property of some lucky staffer at The Boston Museum of Science.

Like they need another one of those.

I’m sure tourists like me are forgetting them in their lockers all the time.

It took a while to stop penalizing myself for being an idiot, then I had to scrounge the cash together, then I had to look around for the perfect camera at the perfect price.

When all that was finally said and done it’d been 3-4 months.

Now I have an even better camera that takes both quality pictures and video with 60X zoom (great for sporting events) that I didn’t quite know how to use.

Technology really improves in a couple years. I have a sony handcam with touch screens and all sorts of settings that I never dreamed with the other cam I just bought a couple years ago.

Today I’m finally working it.

It’s no good if I don’t work it, right?

And honestly, I missed video updates.

Those were one of my favorite parts of the blog. They set me apart from the rest.

And now I have some videos uploaded again.

I’ve accomplished a lot all ready this am.

I was a little worried I’d forgotten how to work all this technology.

With my mind, if I don’t use it I will lose it.

The video taken of me in the hospital bed is the last footage I uploaded from my previous camera.

It interested me since it shows how hopeful I was after my lung biopsy.

I really thought there would be a quick cure to my shortness of breath.

I thought it was a transient acute pathological process.

Thank goodness I didn’t know then what I know now.

I never would have imagined the outcome.

I really hoped for a “funky fungus” that would go away with, at worst, 6 weeks of anti-fungals.

What I got instead was a ailment more life threatening and lethal than the Hodgkin’s itself, six months of photopheresis, and long term steroids.

I’ll post a “re-introducation” to

myself soon, but probably not today.

Probably not this weekend.

I have plans. Big time plans to celebrate Dani!

A Day At The Beach

Last Video From Old Camera

Friday, May 21, 2010

Visit msnbc.com for breaking news, world news, and news about the economy

Hillary and The Amazing Swag


I left for my appointment extravaganza at Dartmouth yesterday with my purse and a nearly empty art bag.
I always over pack for treatment days.
The only thing I can imagine being worse than cancer treatment is being bored to death during cancer treatment.
I need reassurance that I'll be comfortably distracted.. . . .and I have ADD.
To be distracted I need something to do for every five seconds of my life.
Add these together, and I have a tendency to over pack.
It's something I'm working on.
I started yesterday and only threw my art pad, colored pencils, and a pencil sharpener in my tote.
Usually I have the aforementioned drawing basics, plus all the tools needed to make jewelry, plus my cell phone, and a book.
You never know what could happen.
Then I get to the center and collect all the smut magazines I can and end up reading those, ignoring all the projects I brought.
My dad noticed the nearly empty bag and commented.
I told him I was turning over a new leaf, starting right then, with my new units of blood.
Little did I know there was a surprise in store for me. . . . .
I've said it before and I'll say it again, having cancer gets you some great presents.
All the gifts doesn't make it worth the price of admission, but it certainly makes life more enjoyable.
I had intentions of hitting up the cancerlebrity "swag cart" (for all the free goodies I get) for some more facial moisturizer yesterday (yes, folks, that's how cheap I can be. I get my face cream from the free cart at the cancer center).
It's more commonly known as the "comfort cart"and generally resides in the infusion room, but not yesterday.
Yesterday it couldn't be found.
Not to worry, I immediately had a volunteer fawning over me, practicing Reiki in my green pleather recliner.
Norris Cotton is at the forefront of integrative health services when it comes to providing complimentary care.
The center has a monthly calender outlining all the available events including wig bank days, where patients can get free wigs, support group, Chair massages and reiki.
What's innovative about Norris Cotton in offering these services (since Dana Farber does too) is that they are offered at the bedside during treatment.
These people can come to you FOR FREE!
Free is the hospitals version of the four letter "F" word.
And I hit the jack pot yesterday.
I was nestled all cozy in my recliner, watching TV, snacking, and drawing a portrait of my mom like I owned the place when I heard someone talking about how I was drawing portraits while getting infused.
I am on a portrait kick recently. I started with J, X, Lex, and I in an effort to bring some color to our dining room using colored pencils. I keep the person's likeness but infuse it with bright colors. It's fun and relaxing for me.
Now that people have spotted my talent, I'm getting requests. Who knows, maybe someday, I'll get commissions.
Low and behold it was the "artist in residence," a mythical person I had heard of but had never seen who apparently is in charge of hospital art.
This woman will come to you bringing supplies and give a personalized art class!
I've never had an art class before.
She immediately had suggestions on how to more easily and accurately draw my portraits.
Wham, bam, thank you ma'am. I now can draw more efficiently and effectively.
I'm all about efficient and effective.
Then she brought out water colors.
All sorts of water color options. There were regular water color paints then there were water color pastels and, be still my heart, water color colored pencils!
Who knew those even existed?
She even showed me there is a special paper I'm supposed to use to paint and gave me some to get started.
I was given a free art lesson from a pro, a water color paint pallette with brushes, pastels, and a gorgeous set of water colored pencils.
The pencils are just on loan, but she said she had been lugging those around for months waiting for just the perfect patient that would appreciate them.
And that perfect patient is me!!
So the mystery of the half full bag is solved, I stocked that baby up with art supplies.
I'm so excited. I had so much fun with the project.
She took our picture and talked about using our story for one of Dartmouth's promotional mailings. She thought I was just "so cute," which made my day.
I haven't been feeling "so cute" in a while, and I wasn't feeling adorable at all yesterday.
I had benadryl. I was whoozy. I wasn't talking, laughing, or making jokes, and I always thought when people told me I was "so cute" it was because of my petite size.
That really made my day that she thought I was a cute, cool person even while I am 40 lbs. heavier than average, grouchy and refusing to talk.
I guess "cute" is all about attitude.
Just for fun, for giggles, here are pictures from this weekend a year ago exactly. Obviously, I've experienced some bodily changes.
Oh, what a woman will do to keep breathing.
On a brighter note, Exactly a year ago my future sister-in-law was graduating valedictorian, magna cum laude from UNE with an associates degree in nursing.
Today Grace is graduating, again valedictorian, summa cum laude, with a bachelor's degree in nursing!!!
I'm sad that I wasn't able to make the celebration. I'm so proud of her!
Also another event worth celebrating BIG TIME this weekend (and we are) is Danielle's one year anniversary of her pancreatic transplant.
It looks like it's been a huge success. I'm glad I at least can participate in this exciting day. It's going to be one good weekend.

Thursday, May 20, 2010

Live from the hospital

There was no improving my mood the other day. I did everything. I went to the salon for a trim and a style. I bought hair accessories to make me feel pretty while it's growing out. Then when I got home and started playing with my newly purchased products (mousse, hairspray, and putty, oh my) none of which I have ever owned before. I was still disappointed. I'm pretty sure my hair is not the problem. The problem is my face. There is nothing I can do about that except stop looking in the mirror. Even getting some new bras didn't lift me up in either of the ways I hoped, though discovering I am still a 34 and not a 36 helped. Now I have to return the 36s I purchased, but I definately have a full C cup, again something I have never possessed before. No, none of this made me feel better. Hopping in the shower, getting out, brushing my teeth and pretending I started a whole new day didn't even help and I just didn't get it. Yesterday i got the answer regarding what was causing my fatigued crankiness: a hemoglobin and hematocrit of 8.6 and 26. Normals are 11 and 33. I don't just need rest. I need a transfusion! Guess where I am now? Sitting with blood dripping in. I almost could not receive my pheresis yesterday due to the low hematocrit. Didn't have a high enough blood quality to remove the cells to treat. We cut down to 3 cycles instead of four. Today I'm getting transfused to raise my H and H only to go to pheresis and have my new blood removed treated and given back. It's going to be a long day. Thank you everybody who has donated blood recently, the life you helped may be mine. May is national blood donation month. That includes bone marrow donors as well. If you participate in any of this months blood donation events be sure to check the box that you'll donate marrow if needed. You could save a life! Thank goodness j is coming back from his business trip tonight. Yes, I've been solo this past week. X and I had planned to travel to portland ME tonight with my parents to attend my future sister-in-laws pining ceremony. She is getting her bachelors degree in nursing!!! X is iffy about leaving. He misses dad. I am gung-ho to go and start the all-star weekend I have planned which includes the pinning in ME then make-up and glamour shots sat. am with brynn and dani as a Relay for Life fundraiser (unfortunately I don't have any information other than it will be $25) then it's to Dani's house to celebrate..... What for it..... Pregnant pause of anticipation... The year anniversary of her pancreatic transplant!!! Yes, it's been a full year since Dani's transplant! Her A1C, the measurement of her average blood sugar levels, had been 14 for 3 years prior to her transplant. Normal is below 6. Her A1C for the past year was 5!!! She's back to normal. She hasn't experienced any highs or lows that would send her into a coma or psychosis. She no longer has to live in fear or endangering herself or others because of sugar level fluctuations. This is huge to celebrate. I'm so proud of her! Everybody make time to remember and celebrate her this weekend, even if you can't be with us.

From Tuesday Evening

Ugh, thank goodness this day is finally over.
 Nothing about today made it especially bad. There wasn't one big event. It's just the culmination of a lot of events all at once. 
And I'm tired. Even after a 3 hour nap I'm still tired. 
So today sucked for no special reason, but I think I've indetified the tipping point, the trigger that put me in the foul mood. 
It wasn't x fighting to get out of school, whining and throwing every excuse in the book, it wasn't grocery shopping, which I hate because it's dirty and absolutely exhausting. It's a reminder of how disabled I am. 
I dred the grocery store, but not as much as the pharmacy. I went there today too. 
No the tipping point was x's IEP meeting. Since x has a diagnosed speech and language delay I go in for yearly meetings to revise his goals based on his needs and accomplishments.
 It used to be an easy meeting. 
X would get speech therapy. 
I would make sure he was healthy and would keep hearing. After three sets of tubes and the removal of his adenoids and tonsils, he still got an ear infx a couple weeks ago. The muscle in his ear is supposed to mature so he's not so susceptible to infx by 8 yrs old. Today he was complaining his ear hurt. I guess he will be 8 when his hearing issues go away. His speech is improving. 
He can make correct sounds, except "Rs," and barbara walters has had a long successful career without using those. 
But now there are many additions to what was once a single goal. 
Yes, now he's identified as "at risk" in reading. He has delays which may require occupational therapy. He has issues with spacial reasoning. His constant movement, which everybody on the team has recognized, was brought up, giving a bit of a shock to me. I knew he was fidgety. I know he"s always moving. He is down right exhausting, but I thought it was in the realm of normal. ADD/ADHD crossed my mind and hasn't left. That's just another issue/diagnosis/problem to deal with alongside his also yet to be diagnosed dyslexia. He also has social impairments from his anxiety and depression. 
I'm tired, so tired. Todays meeting only reminded me of everything I have to cope with above and beyond my health issues. 
I'm cranky and now looking at x differently, like he's suddenly broken.
 Nothing has changed except suddenly I realize that he is probably dyslexic with add/adhd, like me, and there is very little I can do about it. Right now I don't have the energy to form a plan of attack. 
Good thing I have a whole team of people in the school who did that for me. The school has been wonderful. 
His reading has improved significantly since Jan. When he ranked in the 14th percentile. He is now in the 51 after a couple months of daily 30 min, one on one sessions. 
If only he keeps making leaps and bounds like this, I think we'll be okay, just not today. I'm going to bed. Tomorrow, I'll start fresh.

Monday, May 17, 2010

Weekend Update


I decided I was going to watch my weight this weekend.
 I watched it go up two lbs. One lb. For each day.
 How the hell does this happen? 
I think I'll give up and wait for an infection to send me back to my normal, scrawny state. 
At least I know my new boobs aren't shrinking since I'm sure I'll lose weight in the chest before anywhere else. It's the way life works.
 On fri. my fab male nurse kevin was dutifully starting to change my dressing when he suddenly stopped and said, "oh, sorry, I don't even know if carol is here, are you ok with me changing your dressing?"
 My first response was horror. Was he inexperienced? Incapable? Was he going tro kill me by giving me an infection? Worse, did he have some sort of disciplinary action against him? Was he the black widower of dressing changers? 
".....Because the location may make you uncomfortable." He ended. 
Ooooohhhhh, I burst out laughing. 
Because I have cleavage!!! Where my port was once innocently placed on bone, I now have breats where I've never had them before! 
Thank goodness. I breathed a sigh of relief. THAT problem never crossed my mind.
I like that. It is my excuse as to why the dresses I once wore are now shirts that barely cover my bum. That certainly couldn't be caused by my stomach.
Now that I've accepted my voluptuousness, I think it's time to play up my ass......ets. 
I'm going out to buy some reasonable fitting bras that will help the ladies realize their full potential. 
In further news, J and I escaped on a coveted date night sat.
 I don't remember the last time we had one of these but we're guessing it was in the fall sometime.
Yes, there are times that we "get away" to such exotic locations like Mass Eye and Ear or Dana Farber, but this was the first our time in ...... Yeah, that long, Together, just enjoying. 
I made it a group date with some friends.
 When 3pm rolled around j and I were scrambling to pack up our chairs from the side lines of x's baseball game and book it to freedom: an entire night with adults.
 X was two when I knew I had cancer. I was still carrying him in my arms from the car. He was wearing pull-ups, trying to get potty trained. My friends were also in a very different place: their early twenties. 
Most were single but looking which made late nights dancing and drinking their favorite fete. It was terrible adjusting from life in nyc to nh, then again to life as a free single woman to a career family oriented wife, but the worst was the transition from healthy to ill. 
Many friends were not understanding or accomodating to the fact that I wanted to be in bed by 9pm, I certainly wasn't going to leave for the bar at that hour. 
I remember trying to get these same friends to "do lunch" and being blown off. 
Yes, with disease comes a lot of losses and among those are fair weather friends, but what I received in return is the understanding and comfortable acceptance that not every person or every friend can be everything you want them to be. You have to accept them for who they are and what they have to offer as a unique individual. 
It's rare to find those fabulous few who meet all our criteria, and even if a tragedy beyond control happens, that doesn't mean your best friends will/can grow up with you. 
Remembering these things really puts into perspective how long I've been fighting and How long we've been suffering as a family. 
Not a problem any more.
 Dinner and a movie took place as a late matinee starting at 3:40. (Robin Hood. I was disappointed. It's more gladiator meets quesi-do-gooder than rob the rich to feed the poor. Would have been made better with more shirtless crowe scenes). 
New Socials, the new restuarant that now stands in place of Sophie and Zekes, made up for the disappointing movie. The lobster rolls are a new fresh take on a new england favorite and the steak tips were cooked to perfection (Hey, if I'm getting out, I'm going out right). Everybody in our party was impressed with their food. 
All of you in the area, I'm giving you the green light to go.
But for desert, check out Le Moo's (on River rd.; rte 12A), which is now open for the season. This is a barn cum ice cream shop with with beautiful murals and spacious sitting areas to lounge in. Another barn is set up with picnic tables and indoor games. The best thing about le moos (owned by the LeMieux's) other than being around the corner from my house and reasonably priced is.... It was created and run by high school students. 
Yes, these young entrepreneurs pitched the idea to their parents and their parents let their imaginations run wild. 
How is that for a weekend update: Good things are happening in claremont and in my life. Let's hope the trend keeps up. 

Saturday, May 15, 2010

Parenting Discovery

I've discovered something I hope all parents will be able to realize.
I've accomplished something I pray all parents can achieve.
It is recognizing the value of a dollar to the under ten year old set.
This group of kids are healthy, able-bodied, and depending on how they've been raised, absolutely capable of WORKING.
By working I mean yard work, household cleaning, car washes, car cleaning, dog grooming, the imagination is the limit.
I never imagined I could have my entire yard cleaned by X and Lex fo two Webkinz, but I did.
Seeing as I no longer have the physical capacity to even do minor yardwork, this task would have taken me weeks.
I would have swept a corner of the patio and took a nap.
The two kids had our 3 acre yard with patio cleaned in a few hours. This included packing up leaves and dumping them off.
Impressive, and little do they know, two webkinz is a steal.
Since the elementary school child is in the "good child" stage and desperately needs to please, the work is generally done well, especially under some management and supervision.
Even better, the kids know the parent is their only hope or means of any income. If they want any sort of financial independence, if they want the jobs to keep coming, they need to make momma happy.
And they do.
Today, the living room, X's bedroom, and my car are getting cleaned. . . . . . for $3 a piece to Carter and Xander with the promise of a tip if they do extra well.
The tip comes from my guilt since cleaning includes not only picking up, but vacuuming, dusting and windows.
The boys love spraying and wiping.
That purchase of the play vacuum at two really has paid off along with the teaching early on that money comes if you earn it.
I'm not quite sure how we got this message across so clearly, especially since my monthly check magically appears in the mail from social security, but they certainly don't need to know that.
X started with his entrepenuerial endeavors about a year and a half ago after seeing "Hotel For Dogs."
He's watched my father and I work together in the family building business Five Eagles, LLC (www.5eaglesdesign.com) since he was born. He's seen lots of contracts written and negotiated. He's seen sales pitches andsat in on meetings regarding marketing campaigns.
Apparently he took note, after seeing the movie he came home and offered to babysit Lily during my mom's conferences. He outlined what he would include along with his fee.
Since then, my little man has made some savvy requests, such as to be paid in EUROS instead of the dollar last year (didn't happen, but I appreciated the sentiment).
It is a great deal for me since before Lexi's request for a few extra dollars, my windows hadn't been cleaned in years.
It's cost versus worth.
As an added benefit (or a good excuse to use to other parent friends who may think you are exploiting your kids), it shows the virtue of good work ethic and opens up discussions regarding financial habits.
We've all ready started savings accounts for X and Lex. Now Carter (our nephew) wants in on some work. We're going to start him with a piggy bank, but a savings account comes next.
Parents, harness the power and gain some coveted you time.
I'm loving it.

Thursday, May 13, 2010

Hall Mark Day




Yesterday was a hallmark day in the Ford household.
Jon had his colonoscopy.
For those of you who haven't followed my entire story, my
 husband Jon has Crohn's Disease.
Crohn's is a form of inflammatory bowel disease that causes abdominal cramping, ulcers, and
 persistent diarrhea.
UGH.
He underwent a bowel resection in
 July 2008 due to diffuse scarring in hopes it would not only alleviate his pain but cure his disease.
It didn't cure his disease.
Last years colonoscopy showed that the Crohn's was returning.
The disease is measured on Greeat's Scale of 0-4. Zero being no disease, four being scarring beyond repair.
J is now a 2-3.
We're discussing treatment options.
Of course, one of the first line treatments is remicade.
Remicade is a chemotherapy agent that is infused over a three to four hour period once weekly to begin with at $8000 a dose!
It is a time and money sucking drug.
There is another option, newer to the market, another chemotherapy, that we'll discuss at J's appointment in the beginning of June.
Chemotherapy for the whole family!
Not surprisingly, It's getting harder for me to listen to other people's problems.
Let me clarify, the ones that I deem are brought upon themselves or the people have some semblance of control over or the ones that they could control but just aren't.
Those drive me crazy.
There are too many people with too many problems that they never would have asked for, that they never would have brought upon themselves. 
Generally, I like hearing about people's trials. 
It makes me feel trusted. 
I like to help problem solve or lend a sympathetic ear, whatever anybody wants. 
It makes me feel needed. I feel wise like a guru who has been through enough to impart my wisdom on others. 
Recently, this has changed. 
I hope its temporary. I've been moodier, more irritable, less patient. 
Before, and hopefully again, I could understand that suffering is relative to experience. 
Problem solving is unique to each individuals ability to cope. 
What barely registers on my radar can send another person over the edge and to the looney bin.
I Hadn't been bitter about that before. I do now.
This is new since my pet scan. It's new since I officially feel I will never be cured by conventional means.
I am confident and happy with the idea of postponing treatment and enjoying life.
I'm really, FINALLY, enjoying myself again without the stress of thinking I'll have to return to fight for my life.
I'm still hoping for a miracle.  
But I'm being tested. I'm being pushed. And somebodies gonna get it...... I'm guessing the next person who complains to me about something trivial.

Wednesday, May 12, 2010

It's been a while since I had to do something I really truly wanted to avoid.
That's the upside of having the cancer card. It gets you out of just about anything.
Working? HA! What's that and why would I do it?
If my life had occurred any other way, I would consider myself incredibly spoiled.
No job, no real responsibilities except to my son and family, an aunt that helps with the house, all the bills taken care of by others. 
That does sound nice, doesn't it?
So it's a rare occasion I do something I really don't want to, and when I do, it's always because it's important to someone I care for.
I attended the wake of 18 month old Tessa Newton earlier this week.
She passed away suddenly during the night, being taken from this world far too quickly, especially for such a little angel. 
Who knows why God does what he does. I hope everyone can have faith that there is a reason this happened, though none of us can imagine what it is now.
My heart goes out to the family, friends, and loved ones. 
Please take a second to say a prayer for her and her family.
This is a subject far too hard for me to delve into, which is why I so desperately wanted to avoid any of the ceremonies surrounding her passing. I can't imagine the horror and sadness with the passing of a child far too young.
Now, flipping the script with some good news (again, avoiding what makes me uncomfortable).
Andy is in remission!
Andy has been a perfect, best case scenario for leukemia treatment minus the first round of chemo which did not send his cancer into remission.
He was diagnosed quickly and earlier then he was immediately started on therapy.He underwent two different chemotherapy regimens since his diagnosis to achieve remission (compared to my 6 or so). 
His brother was a donor match for a transplant, which was extremely lucky, since siblings have only a 25% possibility of matching and finding another Loatian in the donor pool is next to impossible). When the first regimen didn't work he was able to consult Boston Children's for a contingency plan but continue chemotherapy at Dartmouth, close to home.
Now that he is in remission and everything is in place for a transplant, the transplant is scheduled for next Monday at Boston Children's Hospital!!
He's staying with his father at Ronald McDonald House this week while undergoing the tests necessary to clear him for the procedure and then Monday is the big day he is admitted to the hospital!
He'll be an inpatient for about 10-14 days and then be required to stay in Boston for at least a month afterwards.
Thank goodness for resources such as Ronald McDonald House and ACS's Hope Lodge that make relocating for these procedures affordable.
It's been a dream of mine to get extreme makeover home edition to create something like this for Dartmouth's Norris Cotton.
CHaD has David's House. I think Norris Cotton should have a "Hillary's House."
My application is in the works. It's been in the works for years. 
Someday. . . . maybe, when I get my attention span back.